April 6, 2023
Author Meghan O’Rourke joins Jameela this week to discuss invisible illnesses, or illnesses that do not manifest externally. They cover their own personal journeys with Ehlers Danlos Syndrome, how lonely having an auto-immune disorder can make you feel, why these and women’s health in general is so under-studied, the relationship between auto-immune disorders and mental health, and why we can be hopeful about the future.
Check out Meghan O’Rourke’s book – The Invisible Kingdom: Reimagining Chronic Illness – wherever books are sold.
You can find transcripts for this episode on the Earwolf website.
I Weigh has amazing merch – check it out at podswag.com
157 — Invisible Illnesses with Meghan O’Rourke
[00:00:00] Jameela Hello and welcome to another episode of I Weigh with Jameela Jamil, a podcast against shame. I hope you’re well and I hope you enjoy today’s episode. It’s one that you’ve been asking for, for ages, and it just took me a while to find the right guest, and I definitely did, and I wanted to be very specific because it’s a subject that is so personal to me because of my experience with chronic illness. I have Ehlers-danlos syndrome. I have hEDS, which means I have the hyper mobile type. So I look Ehlers-danlos syndrome is a connective tissue disorder and we get into it more when we talk in the episode. But mine also means that I’m hyper mobile, so I dislocate a lot of the time and I’m very, very I’m overly stretchy, not in like a sexy, fun way. I can be sexy and fun, I guess, but it’s also very painful and very scary and problematic sometimes, especially if you’re trying to have a a big fun life and career, which I am. And so I talk in quite a lot of detail about my personal experience with that chronic health condition. And it doesn’t really matter what the specificities are of each chronic health condition. We are all in this together because we all have the shared experience of trying so hard not to feel completely persecuted, and not giving up every single day, feeling like nobody understands you and nobody’s careful enough with you. And especially if it’s a chronic health condition in which you look okay. Similarly with mental health. If you don’t look the way we think a mentally ill person looks and people don’t receive you with care or sympathy or even belief, they just gaslight you. And that’s a massive part of how chronic health doesn’t just eat away at your body, it can eat away at your mind. And the only way to really stop that is to be able to come together and share our experiences and sort of un-gaslight each other. And that’s exactly what you hear two women who’ve never met before do in this chat. Meghan O’Rourke is the author of the New York Times bestseller The Invisible Kingdom Reimagining Chronic Illness. She is such a well-decorated and well-respected writer and and speaker. And in this episode we talk about what an invisible illness is, the impact it can have on how someone is treated. We discuss our shared experiences because she also has Ehlers-danlos syndrome. So we kind of deeply trauma bond right in front of you on this episode. We discuss why women’s health is so understudied and how that affects the mystery of why women tend to have autoimmune diseases more than men. And we discuss why we should be hopeful for the future of medical research and for people with autoimmune disorders. It’s a really fucking amazing chat. I left glowing because it felt so incredible to feel seen and I hope that’s what I’ve done for you today with Meghan’s help. She’s so great and honest and has such a clear way of describing something that often feels so esoteric and intangible. And I just adored talking to her. I hope I get to stay friends with her for a long time after this chat, which sounds actually deeply clingy now that I hear that out loud. But I just it just felt so amazing to have someone see me, really see me and get me. And so, as I said, I hope we do that for you in this chat. I hope you enjoy it. And even if you aren’t someone who struggles with your health. Firstly, not to sound a bit scary, but the last three years has taught us that even the healthiest people can suddenly develop something like long COVID and and enter the world of chronic illness unexpectedly. But you never know who is going to pick. It doesn’t I mean, no one no one is really safe from chronic illness. But even if you are someone who cares for another person with chronic illness or knows someone who doesn’t know how to support them, hopefully this episode will be helpful for you. On this podcast, we are always looking to bring as many people together via understanding as possible and chats like this are so needed and I promise I’ll have more. I think I just needed to find the right pathway to do so. And I’m dying to hear what you think. So DM me as always. But for now, here is Meghan O’Rourke. Meghan O’Rourke, welcome to I Weigh. How are you?
[00:04:19] Meghan I’m okay. I’m glad to be here talking with you.
[00:04:22] Jameela I’m so excited that you’re here. I’ve been wanting to have a chat like this with someone for the whole time I’ve had this podcast, and so I’m incredibly excited and I just want to jump right in. Loads of people told us about you told us about your work when I was searching for someone with whom I could discuss chronic illness in depth, and I’ve touched on this subject before with other episodes, but I haven’t had such a similar experience as the one I’ve had with you. And so not just for my audience who’ve been dying for a conversation about this, but also for me personally. This means a lot. I really appreciate you. So just to just to dive in. What made you write The Invisible Kingdom Re-imagining Chronic Illness?
[00:05:05] Meghan You know, it really was born out of my own experience, and I the quick version is that I got mysteriously ill right after I graduated from college and went on this roller coaster of symptoms that roamed my body, which is some of them more small, some of them more significant I was in a lot of pain. I experienced fatigue. Anyway, I went to see doctors on and off for more than a decade, and no one could tell me what was wrong. And in fact, many of the people I saw, I didn’t even believe something was wrong. So I would go in saying, you know, I think I feel like something’s wrong. I feel like my body is working differently from other people’s bodies. And it was a lot of just like, oh, you have a stressful job, you’re anxious, you should get more sleep, that kind of thing. So then my mother died. To make a long story short, I got really, really sick after she died. And kind of it was like falling off a cliff or suddenly going into deep water after walking in shallow water. And I realized something was very, very wrong. And I at that point became a much more kind of fierce advocate for myself and embarked on this quest to identify what was going on and to really get answers. And that involved looking for better health care providers, journeying into integrative medicine and doing research. And I think at one point along the way, feeling incredibly lonely, I realized that I had to take all of this research and obsessive learning I was doing and turning it into a book that I could share with other people who, like me, probably felt pretty unheard and unseen and similar journeys.
[00:06:39] Jameela Mm hmm. And so the health issues you described, you would call invisible. Some people might not have heard the terminology invisible illness. A lot of us have heard about chronic illness. But when we think of someone being incredibly sick, we think about them looking sick, right? They’re going to be pale or they’re going to have a walk that doesn’t look as though it’s easy to do. You know, we expect to be able to see it written all over anyone’s face that even invisible disabilities exists. And so. So did you look like the picture of health?
[00:07:12] Meghan Yeah. No, you just nailed it. So I looked so healthy. I was a big runner. I was very fit. And my doctors would be like, Your cholesterol is so low. And over and over, people would say to me, You look great. How could you be sick? And so that was this added complexity, because I could tell that people really didn’t believe I was sick. Right. And that added a whole different kind of shadow to the experience of having to insist you know something’s really wrong and then feeling kind of guilty almost right, because it was like I looked fine. And in fact, I had a host of my ultimate diagnosis. I had multiple diagnoses of these so-called invisible illnesses, including an autoimmune disease, including a genetic condition, Ehlers-danlos syndrome. I have the hyper mobile kind. Anyway,
[00:07:58] Jameela Which I have.
[00:07:59] Meghan Which you right. And so, as you know, it’s like people don’t can’t see that you’re sick. And that is one of the strangest things about the experience is how acutely ill you can be while looking fine.
[00:08:12] Jameela Did it ever make you gaslight yourself? Do you ever question yourself?
[00:08:18] Meghan 1000%
[00:08:18] Jameela Yeah. What was that like?
[00:08:19] Meghan Oh you know, Jameela, that was almost the hardest part of the experience. And to be honest, I feel I’m still unlearning the gaslighting that I did. So what I would say is, in that decade I was describing when I was going to doctors, I really accepted the narrative that maybe I was just a little neurotic or a little bit anxious, even as some part of me. It’s hard to explain because it is a bit paradoxical. Some part of me knew, but then another part of me, the acculturated part of me, the part of me that was a young woman thought to listen to experts,
[00:08:51] Jameela Right.
[00:08:51] Meghan I really started to believe that that maybe I thought, God, you know, I must just be like, bad at living. I just never figured out the whole.
[00:08:59] Jameela Fussy.
[00:08:59] Meghan The whole adulthood fussy. The Princess and the Pea my mother used to call me. And so it was my mom too, and my dad who were very loving parents. But also, by the way, this is something that happens to many people is your own family kind of participates in the gaslighting a little bit unintentionally, because most people just don’t understand. I think, the nature of these illnesses.
[00:09:22] Jameela And psychosomatic symptoms do exist. They are real. You know what I mean? Just like placebo exists. And so we we feel afraid. There’s that kind of like, I guess that instinct, especially in parents, you know, when a kid falls over to be like, Oh, we don’t want them to be traumatized by them falling over. So it’s like Get up, get up, get up, get up. Come on. You’re fine you’re fine you’re fine look over there. And so I think that that lives on in parents for quite a long time of just like, positive thinking, you know?
[00:09:47] Meghan Absolutely.
[00:09:48] Jameela I think you can neuroticize about your health and that can stress you out and that can make symptoms worse. But at the same time, I don’t think there’s anything more stressful than being denied a diagnosis because being denied a diagnosis means being denied care. It means being denied the hope of treatment and the hope of another lifestyle. And something you said in your book, you know, and that you said generally is that, you know, you were in your thirties, I think it was when you realized that everyone else hasn’t been walking around in pain and feeling like shit their whole lives. And I really resonated with that. I was young. I was I was diagnosed with Ehlers-danlos syndrome. Would you explain what Ehlers-danlos syndrome is?
[00:10:30] Meghan Sure. Absolutely. So it’s a it’s actually a host of different interconnected genetic conditions that affect what’s known as connective tissue in your body. But connective tissue, which I didn’t understand until really almost finished, had almost finished writing this book affects everything in your body, including this the walls of your veins. So in Ehlers-danlos syndrome, your connective tissue is made differently than it usually is, and it’s a little bit more fragile. And so it’s a little stretchier. And so your joints are held together by ligaments that tear more easily, but your veins also don’t constrict properly, which can lead to fatigue because blood’s not getting to your brain. Right. So all of these very basic human processes that we rely on in an unconscious way are just more fragile and more susceptible to going wrong in the bodies of people with Ehlers-danlos syndrome.
[00:11:20] Jameela And if you need an operation, you bleed more. You can’t have a lumbar puncture, which is where they retrieve information like cellular data from your spine, which is sometimes very important in a big emergency. And I think pregnancy is incredibly dangerous. Childbirth is extremely dangerous. But also you can’t have the injection. And what’s that called?
[00:11:39] Meghan The epidural.
[00:11:40] Jameela Epidural. You can’t have an epidural safely. Dentist work is fucking horrendous because your teeth are super hard for some reason. You know, that was a symptom of mine. And you dislocate constantly, especially if you have the hyper mobile type and so you’ll be walking down the street in heels having the best time and then one minute later you’re having to be like carried the rest of the way to the restaurant. You swell, I don’t know about you, but I swell, I swell, constantly by the end of every day, in fact, like probably by 11 a.m., I start swelling. And then by the end of the day, I’m sort of like a marshmallow man version of myself. But I was diagnosed with Ehlers-danlos syndrome. I was really lucky. I was nine years old. I was never lucky to have a Ehlers-danlos syndrome. But, I was lucky to be diagnosed so young because EDS makes your life so complicated that you have to live in a very safe way for EDS, which means no contact sports. It really means be very careful if you’re going to try drinking or taking drugs, which is why I didn’t do either. It means be very careful about the shoes that you wear. Be careful about the holidays that you go on. Be careful about the climate that you choose to live in. You have to pay a lot more attention to that stuff. So I’m really, really glad it was. Professor Rodney Graham is sort of one of the like founding fathers of Ehlers-danlos syndrome who diagnosed me. But even even with that diagnosis, there still wasn’t a lot of information there’s a really only proper information coming out like now. So I spent my twenties also thinking, how was everyone going out all the time? How are they taking drugs and then going to work the next day? How’s everyone having this much sex and not getting constant like fucking kidney prob? Like how is like, how are they doing this? And I was like, What cheat code? Do I just not have enough drive. Am I lazy? And lazy was a word that was used about me all the time, and I used it about myself. I still do. And I also just am lazy. So let’s just be real is not just illness, but but I. I always felt like I was some sort of like, pathetic weakling for the fact that everyone must feel this way. I didn’t know that everyone didn’t feel 80 from the time they were 16.
[00:13:47] Meghan You’ve just I mean, I’m actually going to get tears in my eyes. I mean, you’ve just expressed so much of what I felt and still honestly feel. They’re get a bit easier as you got older because there’s less expectation that your boundless energy. But you know, that sense that everyone else has more energy and it must be something about you as a person that’s wrong, that’s flawed, that’s lazy. I mean, you know, you said you really are lazy, but I would just say like. But as you say, every aspect of her life is more complicated and takes more forethought and takes just a little bit more willpower and energy
[00:14:21] Jameela And planning.
[00:14:21] Meghan And planning. And that is exhausting. And, you know, to this day, my husband has no idea how exhausting it is for me just to kind of get through the day and look, I have an amazing life. I have two little kids. I have a great job. I write books like I love my life. I get to do incredible things, but it all takes a toll. And I think the other part that’s really hard, Jameela, that you’re getting at is that it’s the nature of these kinds of chronic illnesses, and of Ehlers-danlos in particular is that it manifests a little bit differently in everyone. So it’s quite easy to look at another person who’s getting by and think she’s also sick or they’re also sick. Why is this harder for me? Why is my knee dislocating all the time, you know? It’s just that we’re all a little bit different. And it’s a spectrum.
[00:15:07] Jameela It’s a spectrum. It’s a spectrum for sure. And there’s also like HEDS which is hyper mobile, I think ehlers-danlos syndrome which what we both have interestingly, comes with a very youthful appearance.
[00:15:20] Meghan Mm hmm. I did not know that.
[00:15:22] Jameela Because you. Yeah, I there’s something to do with the lack of collagen or something and how stretchy we are. That means that we snap back. So I have I’m 37 and I’ve got no frown lines and I’m, I’m English, like. Right. We frown all the time. Right? I should just be a shar pei at this point, but because it snaps back. So again, like that contributes the fact that I look a lot younger than my peers or I have like smoother skin than my peers. And therefore, again, they’re like, well, you look well, I mean, I got publicly accused of having Munchausen in 2020 and the Internet just ran with it because I had allergies that didn’t make sense. Part of Ehlers-danlos syndrome also means it is I don’t know if concurrent is the word, but you can at the same time get other things right. It’s got lots of co, it’s the co-morbidity the right term.
[00:16:10] Meghan Yeah, I think comorbidity is exactly the right word. Yeah.
[00:16:13] Jameela So like a lot of people with Ehlers-danlos syndrome have a POTS, which I know you have to explain what parts is?
[00:16:20] Meghan Absolutely. So POTS is shorthand for postural orthostatic tachycardia syndrome, which you may your listeners may have heard because it’s in the news a lot after the COVID pandemic, a lot of people with long COVID have some form of POTS as well.
[00:16:36] Jameela Oh, wow. I didn’t know.
[00:16:37] Meghan Yeah. So a lot of long-covid is very either POTS itself or quite like POTS. So in POTS you are basically the autonomic nervous system, which is your unconscious nervous system. The part you’re not really thinking about that just regulates things like your blood pressure. When you when you go from sitting to standing, your blood pressure has to change so that you don’t faint and it needs to push blood to your brain so you can continue thinking and walking and doing all those things in POTS that just doesn’t happen properly. Your nervous system fails. So, by the way, one of the fun things is you faint all the time and you might get a concussion.
[00:17:12] Jameela Constantly. Yeah, I get I get injuries. I’m covered in bruises like I always so worried that people are going to think my boyfriend’s like abusing because I’ve got so many fucking marks all over myself. And I don’t remember how I got most of those bruises a) because I bruise so easily, but b) because I was normally unconscious when it happened. I just constantly pass out. It does, you know, I have found that my POTS and maybe this is sensible, but it gets better when I’m doing regular exercise. So when I’m walking every day, I find that that naturally helps my circulation. But like, I’m fucking freezing all the time. Like, I can’t, like, warm up quickly, I can’t cool down quickly. I don’t really sweat, like I, I don’t like, I take all these supplements and it really get around my blood. So my blood tests don’t show the amount of supplements I’m taking. It’s a real son of a bitch of a condition
[00:17:59] Meghan It totally is.
[00:17:59] Jameela Like it’s unfucking believable and it’s and it’s also like really nice that we can talk to each other in like a shorthand because I imagine when you’re interviewed by someone who hasn’t got this, they’re like, what? and you can have this as well and this. So like another thing that comes with EDS is mast cell, right? Which is sometimes known as MCAS. And that that is just basically your body developing I guess histamine reactions to new things constantly it’s just going on and on. And so I’m allergic to something for a while then I’m not allergic, then I’m allergic, then I’m not allergic. And so my life is like constant Russian roulette of like, can I? And it’s it’s not just food. It’s not like the big ones, like shellfish, peanuts, etc. It’s it was air fresheners for me for three years, so I couldn’t get in an Uber because they got the air fresheners to like, you know, air out all that the drunk’s vomit from night before. And I couldn’t get in like a cab for three years and I couldn’t well, I went to like a, a really fancy dinner party and I had to ask them to like, blow out all of their, like, $6,000 Diptyque candles because I couldn’t breathe. Like, you know, it was a. I was like, And then. And then suddenly I’m fine. So that again, leads to people being like, Wait, I thought you couldn’t.
[00:19:16] Meghan Right.
[00:19:17] Jameela And so it’s this constant. It’s it’s. It’s constant maths. Given that this is a mental health podcast, I would love to hear the impact of of going through something like that, because we’re always glad for the few people who believe us and understand us. They think you’re so strong. My boyfriend just thinks I’m so strong. But like, the toll that it takes on having to be so strong. Can you describe that for me?
[00:19:53] Meghan Yeah. No, you just. It is funny. And I’ll say first, is that it is. It is kind of amazing to hear someone else talk about this, right? Because one of the tolls is that you feel so alone with all of it. You feel like it’s you. Even as I read about these things and I researched them and I interviewed other people and I know, okay, massive activation syndrome exists, right? There are so many years I was so alone with this and I still feel alone with it. Anyone can start to feel like it’s all you like you’re fussy, you’re this. And as you say too, there’s this kind of mathematical, you know, there’s this constant equations I’m doing. I just went on vacation with my kids and I had to be like, okay, I only want to go to this hotel because I’ve stayed there before and I didn’t have an allergic reaction to it. And there’s a food place nearby where I know I can eat right. It starts to sound very, very princess and the pea and it can feel exhausting and isolating to a) experience it. And then b) have to explain ourselves because I think one reason I wrote the book is that people just don’t understand, right? We understand if someone has cancer and has chemotherapy, we know what that looks like. We know they’ll be tired. We know the kinds of things they’ll go through. They don’t actually have to explain it to us. Right?
[00:21:00] Jameela I know but Ehlers-danlos syndrome would just make such a boring movie.
[00:21:03] Meghan It would be a terrible movie, right? It’s not a love story, right? It’s just chronic these things are chronic. Right. So I think.
[00:21:09] Jameela That’s our presentation.
[00:21:11] Meghan I know, right. But it’s like we both have to undergo something quite challenging. And then we also have to find a way to explain it to other people. So for me, that’s been a very up and down experience, I think. I don’t know. You know, sometimes I think, okay, I’ve got this like I figured it out. I know how to advocate for myself and I’m confident in my ability to do so. And then all of a sudden that will just all disappear and I’ll have a really bad flare and I’ll think, What did I do wrong?
[00:21:39] Jameela Oh, my God same. Same. Yeah. And I. I have at times like there was a point where in February this year I was in so much pain that I became suicidal again. And I haven’t been suicidal in years, probably since I got gaslit and accused of having Munchausen by the world. That made me really suicidal.
[00:21:57] Meghan That was horrible.
[00:21:57] Jameela It was really horrific. And I was also like, You know what bums me out about that the most is that the stupid sons of bitches who started that rumor didn’t realize that like I can I might be okay. Like I might I might have a support system. I’ve got money for a good therapist, but all the other people out there who are reading that, who go through the same thing, who have the same condition or some other autoimmune disease like lupus or a lot of things that you cover in your book, right? All kinds of different autoimmune diseases. In a second, I’d love to discuss what an autoimmune disease is, but like so many people struggle with invisible illness and then the chances of them being accused by Munchausen grew via my being like, dragged by my pubes across the gutter of the internet. But I felt suicidal again in February because I was just like, I just can’t. I can’t. And I don’t advocate for that. And I and I got through to the other side of it, and I feel really good now. But I do want to make space for people who feel that like you’re not weak if you’re like, Oh God, I just want to tap out. But you do have to try to carry on because it does lift. But there are times where it becomes so overwhelming where you’re like, Oh my God, I just like, I had some fun in like last summer. And then I got sick almost immediately after. And so you feel kind of like, do you ever feel like you get punished like having a good time or having a normal time. And then you go through periods of feeling better and you’re like, I’m cured. It doesn’t matter how many decades you’ve been alive, but you know, you get this like you’re just like this constant, like Disney character esque optimism that, you know, you’re like, I’ve cracked the knot. But I’m going to be fine. And then I get sick again and it feels like you’ve been like, kicked off the fucking top of the Empire State Building.
[00:23:44] Meghan Totally. Do you know what that makes me realize, though, is that, you know, I think we spend so much time wondering about what kind of people we are, but just think about how optimistic we actually are. We’re actually very optimistic people, many of us who are chronically ill, because when we get better for a moment, we’re like, life is amazing. Let’s suck the marrow out of it. Right?
[00:24:01] Jameela So true, so true. Oh, my God. I like if I feel well, I wake up like I woke up this morning and my face wasn’t swollen. And like, I have just been a delight to everyone. I just because I’m not fit, because with the swelling, with the swelling comes like the feeling of like the brain fog and the fatigue. And I woke up and I just felt okay. And I got 7 hours sleep, which is very difficult to happen with Ehlers-danlos syndrome. And and I’ve just been like, I, I’m in the best mood ever. And so I wouldn’t I would still rather not have this higher high if I could not have such low lows.
[00:24:35] Meghan I know.
[00:24:35] Jameela But there is a there is a real beauty to chronically sick people. I know that’s such a grotesque sentence, but I’m going to explain it in that we are fucking legends. We are legends for getting out of bed every day after getting, frankly, anything done. Like for going outside in, weather that is damp or cold, which changes the fucking like pressure in the atmosphere. Which changes
[00:25:02] Meghan I know which makes everything terrible. I know.
[00:25:05] Jameela Which is ridiculous. We’ve had like rain in L.A. for like six months and I’ve just been so sick because of it. And it’s so infuriating that something like drizzle in a relatively warm climate compared to most places in winter can just take me out. But we are heroic in our capacity to to carry on and also to maintain that optimism that you and I were sort of joking about a minute ago because it’s really fucking testing and and we do it without the social support of anyone really understanding or believing us. And and I have a lot of people who, you know, write to me all the time about how do I explain to my partner. Because I think that’s another struggle is like, there’s this guilt. I don’t know if you feel it, but I feel this guilt sometimes because I’ve been with my boyfriend since he was 26. And and I’m like, Oh, God, like, I’m slowing down your life because there’s so many things that I can’t do, or you have to go and do without me. And you wish I could come like he’s a DJ and he DJs until four or five in the morning it’s like I can’t fucking go and do that. I’m not normal.
[00:26:06] Meghan No.
[00:26:07] Jameela Can’t. I can’t participate. I can’t go on tour with him and travel and fly every day like I would fuck up my body, like. And so, so I, I’m still wrestling with and I wonder how you deal with that because you have a whole family.
[00:26:20] Meghan Yeah. It’s really.
[00:26:21] Jameela You shouldn’t feel guilty. I’m just saying that.
[00:26:23] Meghan We wish we shouldn’t. But I first want to just echo. I think I really do. This sounds hokey, but I want to. I just so agree with you that I really do feel that the chronically ill people I know are the strongest people I know. And no one has any fucking clue, sorry, has any clue of how strong they are.
[00:26:42] Jameela Oh no please, we love swearing on this podcast.
[00:26:43] Meghan You know, it’s just like just to get through the day, like the amount of willpower that all of us are using. So I just salute everyone out there who’s doing that various ways. And then, yeah, you know, I think I’m like, it’s maybe the mood I’m in right now, but I’m just like, No, the partners have to get with the [inaudible] like no they have to undserstand where we are. Like, we should not feel guilty. Of course, there are times where I feel incredibly guilty, especially as a mom. Talk about POTS and EDS. By the end of the day, usually I’m wiped and it’s really that’s when my kids have like that weird burst of mitochondrial energy.
[00:27:17] Jameela It’s like puppies they have like zoomies.
[00:27:18] Meghan It’s just like suddenly, like come alive like gremlins and I have to be like, nope, can’t do it. I have to lie it out. Like you can come jump on me, but I can’t get up and run around with you. So, you know, my kids at this point kind of know that. And there are times where I feel really, really sad about it, or they’ll be times where my kids see me in pain and they get really, really worried. But I’ve been quite transparent with them because I, I really want a world where I don’t know where where chronic illness is normalized and understood and we don’t have to explain it. And so I think ok if I can raise them in a way that helps them see that. And then the other thing I would say is my my older son also, we think has Ehlers-danlos syndrome and basically has been diagnosed with it. He hasn’t had a dislocation yet. So it’s not technically a diagnosis until that happens. But he’s pretty he’s been in PT for it for two years. So I think I’ve also tried to bring, I don’t know, try I try to get rid of the guilt when I can because I want to teach him. I’m going to get a little emotional, but I don’t want him to ever feel like less than a whole person because he’s living with Ehlers-danlos. And so that has been a huge motivating factor for me and really looking at my own behaviors and what that’s teaching him. I’m not great about it, but I’m trying really hard to be like when I don’t feel well, just be like this is what I’m feeling and this is what I’m going to do. And that happens sometimes and that’s okay.
[00:28:45] Jameela Yseah. Yeah. It’s it’s really, really vital. And I’m really lucky that I have a partner who’s always just like, he just thinks I’m so strong and he has done his due diligence to, like, look into it so much and talk to my, you know, like medical practitioners and, and really understand not just my point of view, but like everyones. So there are certain things where because I don’t look into the condition very much like I’m learning stuff from you and you speak about it almost as if you are a rheumatologist. It’s it’s insane how in-depth your knowledge is. I’m too afraid to look at what else is coming because it’s just like it’s a condition of which you can deteriorate. So I don’t really want to know. But he seems to already be like ahead of it, so he knows what’s coming. I think it makes him feel better to to know what’s coming, whereas I’m not up for, I’m not for that as much. And so he I do urge you to urge your partners to educate themselves because it changes so much when they understand that your fatigue or your sometimes like lack of sex drive or your sometimes lack of life drive is not personal. It’s nothing to do with them. They don’t understand that you are pushing a fucking boulder up a hill from the second you open your eyes in the morning. And the reason this conversation is probably the most timely is because post-pandemic. Of course, a lot of people have had illness for the first time in their lives. They’ve had what, you know, long COVID has caused chronic illness in a lot of people, as you were saying, some of them even have POTS, which is very random. But, you know, we’re starting to have a more global understanding of chronic health conditions and how you can look okay on the outside, but you feel like you’re being dragged to the core of the earth while you’re moving, which sounds dramatic, but it’s not really not. But because a big part of why we need to destigmatize or like at least open up the conversation around invisible illness is that if we can. I guess see it doesn’t work because we’re calling it invisible, but at least if we can understand it, we have more chances of more money and focus being put to treating it.
[00:30:53] Meghan Yeah. And I think we’re trying to make it visible. I think that. I think we do. I think. You know, someone was asking me how I dealt with being so sick all that time and all that physical suffering. And I said, you know, the physical suffering was excruciating and incredibly challenging. But the thing that almost killed me was being invisible and having all of that suffering go unseen and unrecognized and therefore feel not meaningful. I think that as humans, we want to feel our lives have some meaning in this crazy, chaotic world that we live in. Right. And it’s we want that sense that, I don’t know someone sees us and therefore there’s meaning to what we’re experiencing. And when it’s completely invisible, it’s hard to feel that there is any meaning to what we’ve gone through.
[00:31:46] Jameela Yeah, it’s it’s incredibly tricky. And then you add the layer of the chances of that going unseen are so much higher when you’re a woman.
[00:31:55] Meghan Yeah.
[00:32:03] Jameela Also, you had a statistic that was wild where you were saying something like 45% of people at the beginning of their journey with a any kind of chronic health condition like autoimmune disease, etc., or something like EDS are accused of hypochondria.
[00:32:21] Meghan Yeah. So this is a statistic that specific to autoimmune disease, which by the way, is something medicine does know exists. It’s pretty a lot of people a lot of women in particular have autoimmune diseases and they’re very real and very debilitating. And there’s a wide number of them. And this is a figure that came from the Autoimmune association and they found that in their first years of being sick, 45% of people searching for diagnoses were told they were hypochondriacs before getting really
[00:32:56] Jameela Fucking crazy.
[00:32:56] Meghan I know, right before getting a really concrete diagnosis of a serious illness like lupus or rheumatoid arthritis or autoimmune thyroiditis all these different diseases that are incredibly debilitating and incredibly physically visible in the body.
[00:33:11] Jameela And that they are fucking hard to diagnose, which is really tricky. There aren’t always clear markers like there isn’t a blood test for Ehlers-danlos syndrome, which is why it takes such a long time for most people to get diagnosed. Same thing with with many of these things, like we now have a test that shows if you have autoimmune markers, but it doesn’t tell you exactly which autoimmune disease you have. So a lot of people have like Hashimoto’s or all these kind of different things. There’s no clear signal.
[00:33:38] Meghan Yeah. There can be for some of them. But you’re totally right, that one problem is that there is this marker, they call it an ANA anti nucleic antibody. So interestingly, I had that positive from when I was 21. But a lot of people who are healthy also have it positive. So my doctor was like,
[00:33:59] Jameela Why is that?
[00:34:00] Meghan Just because we all have antibodies in our bodies of our time and the immune system, which I didn’t understand. I’m now totally fascinated in a really nerdy way by the immune system. But like the immune system is a highly personal. It changes all the time and it’s kind of imprecise, right? It’s responding and making antibody. So a lot of us make some antibodies to our own bodily tissues, which we don’t want to do because that means we’re damaging our own tissues instead of, say, fighting Epstein-Barr virus or fighting a line bacteria. But everyone’s body is a little bit autoimmune. It seems at some point or another, it’s just how autoimmune do you get and how much damage does it do and how much over time is your body, your own immune system, your defense system attacking its own tissues? So I think another thing is that we have this kind of patriarchal medical system where again was not taking the testimonies of young women in particular very seriously. And there I was as a 21 year old, and they were looking at my cholesterol and being like, that looks great, but not giving credence to my testimony, which might have led them to say, Oh, she does have this positive ANA, maybe we should take that seriously. So I think one thing we can do through advocacy and talking about this is make that part visible, right? That when people go to doctor’s offices and say, I’m experiencing these symptoms, and then you have some markers of it, that is to be taken much more seriously than I think it has been.
[00:35:25] Jameela And so, you know, this goes back hundreds of years and to, you know, like us being accused of hysteria and and our emotions being used instead of pathology. And, you know, you bring up in the book that sometimes you think that comes from a place of doctors being afraid of not having the answers because they’re supposed to be seen as the all seeing all knowing members of our society that who we turn to when we don’t have the answers that supposed to have them. And so rather than say, I actually don’t know what this is because we haven’t fucking studied women enough in biology, they just go, I think it’s stress.
[00:36:01] Meghan Yeah, exactly.
[00:36:02] Jameela I think it’s this, that and the other. You know, like it’s it’s actually it’s remarkable. And I mean, I’ve gone through, even though I have like one of the top rheumatologists on the planet, Professor Rodney Graham is like, my, my, my doctor is a he’s now retired because his well he’s retiring because he’s in his I think nineties. But, but, but I had such a respected doctor diagnose me and put me in the medical books like I’m in the medical journals from the age of nine years olds. There are pictures of me contorting and all and like them pulling like the skin from my elbow and from my cheeks. And I met doctors from all over the world. And even then, in my twenties and thirties, I still have to explain what Ehlers fucking danlos is to people. And they still don’t fully believe it, that it’s it’s insane. And this exists with so many. Like, I think the only reason people know what lupus is because the word was said every week on the House the TV show just like so it entered like the American vernacular.
[00:37:01] Meghan That’s totally true. House normalized
[00:37:03] Jameela It normalized.
[00:37:03] Meghan lupus yes, it’s true.
[00:37:04] Jameela Yeah. But we still don’t know what it is or what it looks like
[00:37:07] Meghan Or why.
[00:37:07] Jameela Or how you’re supposed to get better. Yeah. And then and then you’re just given like opioids to deal with the pain a lot of times. And they don’t. They treat the symptoms rather than even seek to understand the cause. And opioids fuck you up in a different way. Like I have a liver that cannot handle a lot of painkillers. I also have a thing. I don’t know if you have this, but I don’t know if this is EDS, but I process painkillers and anesthetics too fast.
[00:37:33] Meghan Interesting.
[00:37:35] Jameela They don’t really work on me and I process them too fast. My friend Scarlett Curtis, who was on this podcast, the same thing. So like I’ve woken up in the middle of operations and painkillers stopped working on me incredibly quickly, which is like a slippery slope to addiction.
[00:37:49] Meghan It’s really tricky.
[00:37:50] Jameela You need more and more and more. And so I have to be very careful because I love painkillers.
[00:37:57] Meghan Well, right. It’s like who doesn’t not want to be in pain? I have something very similar. Certain painkillers don’t work at all in me or they work very, very, very briefly. And, you know, one of the you know, you were speaking before about how one of the problems is that we just haven’t researched women’s bodies. We don’t know that much about them. Similarly like if we haven’t researched Ehlers-danlos and these other kind of chronic illnesses that constilate because a lot of them, as you’re saying, do constilate around it. If you have one, you might be more likely to also have others if you have an autoimmune illness. Often a lot of people with autoimmune disease do have connective tissue issues and ehlers-danlos anyway. One of the problems is doctors are giving us opioids, but actually opioids don’t really help with chronic pain of the kind that we have, they’re not that effective for it. And there’s a high risk of addiction. So we need a lot more research into pain management for chronic pain. And that’s an area that’s deeply, deeply not researched.
[00:38:53] Jameela And if you can’t get diagnosed
[00:38:54] Meghan right.
[00:38:55] Jameela If can’t get relieved. You don’t know how to live your life accordingly, because it’s a lot of a lot of living with a chronic health condition is living your life preventatively, you know, and I want to get into that with you in a minute, but there’s something really important to discuss, Right. So and bear with me here because it’s going to sound controversial, but it’s not going to end controversially with the growing conversation around trans people and trans rights. There’s a lot of like you hear a lot of stories of people no longer being allowed to refer to biology. Right. We like we can gender absolutely as a construct. But biology is real and it’s important in in medicine specifically to acknowledge that biology is real. Otherwise, we will never progress in understanding how male and female bodies respond differently to certain medications, but also how diseases and autoimmune diseases can function differently, often like worse for some reason in female bodies. And also trans people can have a lot of complications as to how treatment impacts them based on whichever biology they have been born with. And so it isn’t transphobic to describe biology as a certainty. And it’s really important to be allowed to say that because in the name of making sure that someone who’s transitioning is getting the correct dosage of medication and the correct treatments and and that those people are having doctors look out for symptoms in the correct way. Biology is real, but gender is 100% a construct.
[00:40:31] Meghan Well, I certainly think that we’re not helping anybody by we just haven’t looked deeply in science at how drugs are metabolized differently by different groups of bodies. And, you know, we certainly are have a legacy of misogyny and ignorance about female biology. We do a lot of studies on female animals, but not, I mean on male animals, but not female. There’s a lot we don’t know. Right. Ambien is processed really differently, but we know even less, let’s say, about someone who’s assigned female at birth and has transitioned.
[00:41:11] Jameela Does Ambien make you racist? Is that what it does to women?
[00:41:14] Meghan Ambien?
[00:41:16] Jameela Or just Roseanne Barr.
[00:41:17] Meghan Yeah. Oh, my God. I forgot about that.
[00:41:19] Jameela Sorry.
[00:41:20] Meghan No that’s a good one. I love it.
[00:41:24] Jameela Sorry. But I didn’t know Ambien. How does Ambien react in women?
[00:41:29] Meghan Basically, women don’t metabolize Ambien the same way. And so we need half as much Ambien. And so they actually took Ambien briefly off the market because women were maybe they didn’t take it off the market. But basically after Ambien was released, women were getting into car accidents the next day because they were still on Ambien and they did some retroactive research and realized that those people were metabolizing it totally differently and needed to have half the dosage. So now, if you, by the way, never take your boyfriend’s Ambien because the dosage is totally different. Right. And so anyway, so it’s things like that where the way that drugs, the way aspirin is metabolized is different. But as I say in the book, like we know even less about autoimmune disease and trans bodies, we just there’s so much research that we need to do in a way that is not transphobic, and is not essentialist, but the way the fluid ways that we have biology and gender representation.
[00:42:36] Jameela 100%. And I think I think we both come at that from the place of like the most, wanting everyone to have the proper care that they require in order to live as healthily and as long and as happily as possible.
[00:42:49] Meghan Yeah. And one thing I’ll say is for my book and since my book, I’ve talked to a lot of trans people living with autoimmune diseases and issues of care. I talked about our present for lots of different groups. That is one of the groups that is getting the worst care possible I think.
[00:43:02] Jameela If they’re allowed care at all in the United States.
[00:43:07] Meghan There’s a lot of bias.
[00:43:07] Jameela Yeah, yeah, yeah.
[00:43:09] Meghan Yeah.
[00:43:09] Jameela And it’s and it’s vital depending on, you know, which gender you are transitioning to that you are receiving the appropriate and proper care. It’s really, it’s really extraordinary how long it’s taken for us to acknowledge women’s suffering in health care, isn’t it? It’s amazing how much other women also you’ve been to. I’ve had female doctors gaslight me before, you know, like I’ve had PCOS and I’ve I’ve because I’m slim and I don’t have hair on my chin and I don’t have acne. It takes a while. And it wasn’t until I developed acne. I was relieved. When I got it. I was like, Oh they might fucking believe me now.
[00:43:49] Meghan I know.
[00:43:50] Jameela And then that led to actual like I started like gaining weight and I got acne and finally they were willing to start looking into it. It’s like I had problems with my period. For like a year and a half.
[00:44:01] Meghan Yeah, it’s kind.
[00:44:03] Jameela Before that started to come on.
[00:44:04] Meghan Yeah, yeah, yeah.
[00:44:05] Jameela Like it’s as if as if we don’t know our own body, it’s like we have such a high tolerance of pain. And not traditionally. Obviously that can be different from person to person, but good God. Like we are so self aware all the time. We have to be for our safety.
[00:44:18] Meghan I mean, one of the astonishing things that I found writing the book was how often, you know, different groups are treated differently as we’re talking about women get treated differently, people of color get treated differently, women of color get treated. Really studies show the worst, you know, in terms of.
[00:44:34] Jameela I mean, the the.
[00:44:36] Meghan In terms of like being believed and being able to be like authorities about their own body in a way that you’re describing.
[00:44:42] Jameela Even given painkillers like, you know, talk like an unbelievable amounts of stories of of black women being denied painkillers even during childbirth. And the mortality rate for black women in the United States of America specifically is the worst in the world. It’s it’s unbelievable and so disproportionate. Like it’s extraordinary how much white supremacy and patriarchy still dominates the medical system and dominates what people are learning in school. And they still don’t even understand fat bodies.
[00:45:11] Meghan I know.
[00:45:12] Jameela After all these years.
[00:45:13] Meghan Well, there’s often just it’s really interesting that we hear so much about medical science that often when there is any kind of critique or pushback to medical science, it’s presented as being anti-science. But one of the things that I wanted to point out in my book is that, you know, I’m very, very pro science. The problem is that for many of the people I interviewed when they entered a doctor’s office, some fact of their body and their identity within a larger group meant that all too often, instead of being asked what was wrong with them, the medical system started saying, Why is something wrong with you in a in a in a in a reductive way where the Y was equated with there’s something wrong with you as a person, as an individual, as a psychology, and that’s what’s really explaining your physical symptoms.
[00:45:58] Jameela Now, do you think that specific to the United States.
[00:46:01] Meghan I’m hearing about it in the UK, I’m hearing about it in Canada. I don’t know enough to be honest about other parts of the world. I think it may be Western in a lot of ways because I think in Western medicine we want bodies to behave the same way. Western medicine is kind of predicated on bodies should all behave the same way. And guess what? A lot of our bodies don’t fit that norm. And I sometimes felt that I was in essence, almost being punished or kind of outcast as a person who couldn’t really access health care because my body was not behaving the way it was supposed to behave according to medical textbooks. But what’s really interesting about that is that, well, science itself should be interested in what don’t we know, like whose bodies live at the edge of medical knowledge, and how do we push that knowledge toward their bodies as opposed to kind of rejecting their bodies and saying, you know, you’re not you don’t fit a textbook, so therefore, I don’t believe you. And look, advances in mental health care are one of the most important things that happened in 20th century medicine. And this is not to say in any way that we don’t also need to talk about the mental health piece. But what I saw in my reporting that concerned me was that there was this reflexive desire to see all the physical symptoms that people were reporting as exclusively being triggered by a mental health issue. Whereas what I’m really looking for is a much more nuanced science that’s looking at physical and mental health together. I’m looking at the fact, by the way, that many people with autoimmune disease also experience depression. Either because of
[00:47:30] Jameela But which one causes which.
[00:47:33] Meghan Right. And there’s sort of the depression of chronic illness. And then there’s also like what is inflammation, which is rampant in your body in an autoimmune disease also doing to your brain like we just need a much more nuanced, sophisticated understanding of these questions and a better way of talking about them in a more integrated health care system.
[00:47:50] Jameela Well, also, like we’re still like, no God, we’re still somewhere between calling it anti-science and science. When we talk about gut health and the impact gut health has on your brain, I mean, you’re there is there is a direct link between how your stomach is feeling and processing food and the way your brain feels. And that’s where a lot of brain fog comes in, a lot of, you know, allergies. And like a lot of, you know, it’s the way that alcohol. I mean, I don’t know if this is linked to the gut necessarily, but I really want to understand why certain alcohols make certain people completely change, alter their personality. Do you know what I mean, like, they’ll be fine with a glass of white wine, but a glass of red wine will make them want to fight you. Like what is that? I know there’s got to be some link to, you know, to the way that it’s processed in the stomach and then the brain. Like, it’s just it’s it’s incredibly unusual. And I might I say, because, you know, I believe, you know, from reading your work that you are open to both allopathic and naturopathic paths of recovery, allopathic being like mainstream medicine. I as a as a South Asian and I don’t think I’ve ever really said this before, but like I believe in a combo of both. I’m incredibly pro-science. Fucking wanted to be a doctor. Because I’m Super South-Asian and I am. You know. I am the stereotypes like, I fucking love science, I love biology. I think we’ve made extraordinary strides and we’re saving people’s lives all over the world. But I also think this complete shut down of all of naturopathic approaches. A thinking food has any link to health, a thinking that the gut can be linked to, you know, your general autoimmune. I find it a bit fuckin racist, if I’m honest. Just because.
[00:49:30] Meghan You’re making me laugh.
[00:49:31] Jameela Because like, because like in Eastern and southeastern and South Asian, like cultures, we do believe that food isn’t all medicine. Of course, like, I’m not advocating for going on a celery juice fast if you’ve got cancer. Of course not. But we believe in a in an intuitive and and whole life approach towards well-being. And you look at Asians and a lot of us fucking live a really long like a much longer time than most Western is without a thousand pills in our cabinet, right? There is something to the way that we treat health conditions and our more holistic approach. And an ashwagandha isn’t just some white woman. Like West Hollywood Café Gratitude, like bullshit, like those [inaudible] from my people.
[00:50:22] Meghan That’s like a powerful long studied herb, yeah.
[00:50:24] Jameela Powerful long studied herb Like a Chinese medicine. Fucking extraordinary. Look. Look at how well they are.
[00:50:31] Meghan I know.
[00:50:32] Jameela For fuck’s sake. They look fantastic. Like feeling good. But like, I find it like I don’t feel like we’re allowed to have this conversation. Especially, like, the pandemic became so, like, binary and, like, you are either pro-science or against science, so there’s not allowed to be any nuance. It’s like. And it’s now made doctors feel the most emboldened I’ve ever, even doctors I’ve had on this podcast. Even podcasts like doctors that I respect are so demonizing of anything that that that’s like steps outside of the norm, that it’s becoming mad. And it comes from a place of like, what West is best, do you think? You know, you have all the answers. Look how many medicines your people are on.
[00:51:12] Meghan You know, I think that’s such an important point, by the way, about the Western centric possibly, you know, racist part of that. But and I 1,000% agree with you. I mean, to me, the idea that somehow the whole body and the whole life is not part of our health just seems, on the face of it preposterous. Like and when you actually again, look at science, science tells us that the immune system and the nervous system are totally connected. And it’s just the future of science is going to look so different and it’s going to come back to this full body approach. And I think Western medicine is going to realize how much it has to learn from Eastern animal body approaches and thinking.
[00:51:49] Jameela Yeah, this is less money to be made from telling people to go for a walk every day.
[00:51:53] Meghan It takes more time. And takes more time, right? It takes time to build a relationship with someone where you and also people in the Western tradition are just not trained to think about again, like my body might need certain kind of foods that another person’s body might not like we are all different. We have different processing habits. We need different things to nourish us and to help us be strong. And for example, I was vegetarian for a really long time and it just didn’t work for me. It’s ethically what I would like to be, but I have just realized like my blood work and everything looks way better when I’m eating.
[00:52:30] Jameela Yeah, I’m the same.
[00:52:31] Meghan Some meat and that’s just a body type. And it was Eastern medicine that taught me that. That was the first time people were saying to me, Look, based on your body, what you’re presenting as, here’s what you need. And Chinese medicine got me almost totally better when I still didn’t even have a diagnosis, by the way. It’s so helpful.
[00:52:49] Jameela Well, it was naturopathic medicine that made me realize about, like, my gut microbiome.
[00:52:54] Meghan Totally.
[00:52:55] Jameela And the fact that actually and my, my, my allopathic doctors, they were like, no, no, no. We don’t really acknowledge that Candida or whatever the fuck you wanna call it, like, in the gut is real and this, that and the other. They think it can only present in the vagina for some reason and nowhere else like, but when I started working on like the what I was eating and, and hot foods and the right foods and nothing that’s super super inflammatory like for my personal health I got much better. And when I don’t do it, I get much worse. And there’s a direct correlation. But again, I think it’s it’s it’s financially is hugely financially motivated. I think it is the and this isn’t me about to go well Gwyneth you know what I mean? Like I’d like not to use that as like some sort of a slur but like I’m still like I said, my doctors are, I’d say 70% mainstream science and 30% naturopathic. And and and that’s sort of into regenerative, right? They are into preventative, whereas my allopathic doctors are more reactive.
[00:53:56] Meghan I think that’s right.
[00:53:57] Jameela And I just think that if you are someone who was desperate for answers. Be careful when you are going towards a naturopathic doctor who tells you, I’m going to take away all of your problems because they also operate on a business model which you have talked about in your book.
[00:54:11] Meghan Yeah.
[00:54:12] Jameela But but don’t don’t allow people to demonize you out of searching for answers that more mainstream medicine just might not have yet.
[00:54:21] Meghan And you use the word intuitive, which I think is a really important word, too. And it’s hard because we can sort of have intuitions that turn out to be wrong and we can tell ourselves.
[00:54:29] Jameela Turns out to be anxiety, yeah.
[00:54:30] Meghan We can. We can. I told myself the wrong story about my illness for a long time. But I think as you live with illness and get more and more honest with yourself and sort of keep really good journals or whatever it is that helps you see your symptoms, I’ve started to develop a pretty intuitive sense of like, you know what? I think that food is not helping me. It’s not showing up in any way in my lab work that it’s bad. But like, I can just feel I feel bad after I eat it or whatever it might be.
[00:54:57] Jameela Can I ask why it is that 80% of people with autoimmune disease turn out to be women?
[00:55:03] Meghan Yeah, that’s a great question.
[00:55:04] Jameela Especially given that women are so much harder to diagnose as it’s harder for women to get diagnosed. What is that?
[00:55:10] Meghan I know. It’s like, you know, you won’t be surprised to learn. They don’t really know. They haven’t done enough research. Like, it’s a great mystery. I’m like, Is it a mystery or have you just not put money into researching it? But there’s a.
[00:55:25] Jameela Is it because we’re just so emotional? We’re hysterical?
[00:55:31] Meghan Yeah exactly. And look, it seems to be a couple of things. We have people I want to be mindful of trans people, too. But if you have two X chromosomes, you are more likely to have a mutation in. But if the mutation is on the X chromosome, you don’t have a balancing Y, right? So certain kinds of mutations show up more in people with two X chromosomes and then hormones seem to be a big part of it too, that just different patterns of estrogen in our lives. I seem to be thresholds for the start of an autoimmune disease so something about estrogen and the immune system that isn’t well understood is another. Another piece there. Those are those are two of the things that doctors were talking to me about.
[00:56:25] Jameela Yeah. It’s also like the fact there our hormones are more sensitive to in my opinion, as someone who didn’t go to school but who has lived in this body for a long time and spoken to lots of people who did go to very good schools, but the hormones that we put in chicken that we pump full in fact, a lot of our meats and a lot of our milk and cheeses. Again, another reason why I wish I could be vegan but just doesn’t work for me every time I try. A lot of other there’s pesticides that are on the plants. And again, it kind of you kind of go like, Oh God, I don’t want to sound like a conspiracy theorist here, but we are in the West where we also have lobbyists for, you know, the food industry and Big Sugar, who, if we were to admit that we need a more kind of like intuitive and, and, you know, whole food approach to our health, then that would destabilize not only big Pharma, but it would also destabilize the food industry two of the reigning industries of the United States of America who control our politics and everything else. So we are predisposed to having our hormones fucked with. All that stuff starts to mess with your general biome. It all starts to mess with your system. It starts to you know, we’re seeing like an epidemic not only of autoimmune diseases, but we’re also seeing an epidemic of people being antibiotic resistant. And some of these people aren’t people like me who’ve taken a fucking million antibiotics. They’re people who are just getting it because they’re drinking the water or eating the. Do you know what I mean? Eating the food. And so that’s another massive thing is like, please, please investigate what it is that you are eating to either deal with your chronic health issue not as cure it. I don’t think you could cure them, but I think you can reduce symptoms. And also as a preventative, please look into what you’re eating, what the food source is, where you’re getting it. Organic food is unbelievably expensive, but there are ways to access food that has been less fucked with try to avoid food with chemicals in the name if you can afford it. But just. It’s so vital that we have this conversation that there is a link between our environmental factors and the way that we feel. And and it’s a great place to at least start taking some control of your life. I’ve found.
[00:58:41] Meghan I think the discussion about food is such an important one, and it is one we need to have as a society, because as you say, not everyone has access to these. And I see that as an equity, like a health equity issue, right?
[00:58:52] Jameela Yeah is the wealth gap equals a health gap.
[00:58:54] Meghan We need to make it access to healthy food, an equitable reality. And you know, one of the things I talk about in my book is that we really are living through what researchers call to me, it’s not a conspiracy in any way to say an epidemic of these illnesses. And they’re on the rise, in particular autoimmune disease. And all the researchers I talked to, the scientists say something about our environment and our food system that is causing the rise of is clearly and there’s really good work done by the journalist Donna Jackson Nakazawa I believe her name is where she talks about the fact that we know about carcinogens. Right. We know that there are certain chemicals that cause cancer, but we’ve done almost nothing to investigate what she calls autogens or autogenic chemicals, that is, chemicals that trigger autoimmune disease. There’s been a little bit of work done. It’s very hard to study. No one wants to fund those studies. Right. But some studies
[00:59:49] Jameela Weird.
[00:59:49] Meghan Strangely. But some of the studies that we’re done showed, hey, this chemical that’s used in dry cleaning is autogenic, like it triggers autoimmune disease in animals. So we have to imagine where it would be reasonable to think there’s a lot out there in the food we’re eating in dry cleaning. We do chemical processing of various plants and productions, you know, that’s messing with our bodies. And it’s just it would be naive to think the government is really concerned about that at this point in time. You know, we just don’t have a system.
[01:00:23] Jameela So here we are, we’re talking about how fucked everything is. I hate leaving everything on that note, and I feel like you and I have been able to regain not all, but some semblance of control and understanding over our bodies. And well done for that because really hard as a woman. But where do you feel like we go here? Like, what do you want your book to teach people? Other than that they’re not alone? Where would you like this movement to steer towards?
[01:00:55] Meghan It’s such a great question. I mean, the first part really is the not being alone, right? That I do want people to realize that there’s millions of us and that we’re we don’t have to go unseen and unheard. And I think the second part is coming together to raise our voices, to have these conversations. And it can sound hokey, but the idea of the title, The Invisible Kingdom, was that when you when you’re alone dealing with your illness and being gaslit, you feel quite powerless. But when we come together, we were there are so many of us and it really is this kind of kingdom and in that is visibility, I think. So I think we need to talk about changes in the environment. We need to talk about the reality of these conditions and the fact that they’re quite real, quite debilitating, that we need more research, more funding and we need frameworks for understanding them. So it’s not left to each individual to make the case for the reality of their own condition. We have these conditions. We’re doing our best. We talked about, you know, it’s like everyone living with these conditions. We really are kind of warriors of the day to day. And I think people have a hunger for life, Right. That’s why we’re suffering is because we have a hunger for life. And so I think we just we have to make it known that these conditions are real, they’re common. They manifest in these ways. It’s not fussiness, it’s not you’re being difficult or am I being difficult, it’s just we have to think about our environment. And in fact, we may be the canaries in the coal mine in a way. So it’s actually incumbent on all of us to start thinking about our food systems, our chemicals environments, and how they’re going to affect our bodies. Yeah.
[01:02:36] Jameela 100%. 100%. I also would love to, but I would love to also just touch on like a realization that we talked about over the phone that, you know, I’ve been having and I think you can relate to, which is that, you know, I came into this industry when I was kind of, you know, unexpectedly given this opportunity. And then I was like, I’m going to be a role model for people with Ehlers-Danlos syndrome who feel like they can’t achieve their dreams. I’m going to achieve all my fucking dreams and more so I can show those little kids they can do it. And that’s a lovely sentiment from me. Lovely. What a lovely intention. Fucking dangerous and stupid in the end. Right. I’ve done. I’m not to say that you can’t do anything but Jesus Christ. Have I been humbled by my health in realizing that actually a lot of the things that we’ve been taught to go for, the things that we as sick people look at normal people doing as the goal are just not sustainable for our bodies. And I have had a huge reevaluation in my life in the last few years where I’ve just gone like so a lot of people did during the pandemic. A lot of people tapped out of the hustle culture and fucked off at the rat race and moved to the countryside somewhere cheaper and have had a nicer life and feel better for it. But as a chronically ill person, there’s almost like an extra layer some of us have of pride that like, No, I’m going to do it. I’m going to fuckin show everyone I can do it. Like I’m not going to have something taken away. And when you do that, you can’t help but inadvertently look at your body as kind of the enemy as the thing that’s setting you back and you’re trying to kind of trick your body out of it, or like, I’ll go do this huge tour really quickly and then I’ll give myself a week, you know, to recover from it. So you’re pushing yourself too hard. And I have reevaluated what those big goals of mine are. I’ve been talking about it a lot on my Instagram that, like, I’m just not going to be able to do what my peers can do. And you know what? That’s okay.
[01:04:35] Meghan Totally.
[01:04:35] Jameela Because I want to achieve some of my dreams, but I also want to feel good while I’m doing them. The amount of times I’ve done something that has like literally made history or like broken a record or done something that’s like great representation of my people, Sometimes it has resulted in a mental illness in which I couldn’t then enjoy myself afterwards and fuch that so fuck the rat race fuck hustle culture. I’m never going to be one of those full time, you know, public figures. I’m going to take 50% of my life to spend in my bed or on my couch with my friends. I’m going to live in warm places. I’m going to prioritize eating well rather than saving up loads of money. So I can have loads of money. Like I, I, I don’t want to. I don’t want that expensive bag. I want that healthy unfucked with food, you know, like. I’m just I’m done with everything that women specifically are told to do. I don’t want to try and achieve the unachievable anymore. I’d like to just find, like, find a happy balance and know that it’s okay. You’re not quitting if you choose to, like, tap out of the absolute top of the mountain, go halfway up is fucking amazing. And that’s and I’ll meet you there.
[01:05:46] Meghan You know, I needed to hear that today. I this it’s. I so agree with everything you’re saying. And it’s amazing I’ll have all these moments where we get pulled back in. Right. Everything about my life is structured around my illness, and that’s part of why I can do all the things I do. And. And then that tricks me into thinking I can do more than I can. So I just got back from my paperback book tour, which was incredible. And it was such an honor and incredible experience for me to go meet other people and talk to people like you. I mean, I feel so much less alone while doing it, but I was traveling a lot and this week has been really, really hard and physically and mentally. And I think I’ve been also struggling with the mental peace of recognizing that like, oh right, it did take a toll on me. And I’m not invisible and like my hacks get me so far, but they don’t cure me, right? There are moments where I’m like, I just want to fantasize that I can be that self who can do all the things and be part of the rat race. But what this has taught me over and over and humbles me into realizing over and over is that right I’m just a person in a body that is a little bit broken in certain ways and. I. I have to learn to live with it. I’ll tell you, it’s hard. Like, sometimes I’m like yes.
[01:07:06] Jameela Painful.
[01:07:08] Meghan I think one thing chronic illness does give us, and I don’t know if you felt this, but in the pandemic, I felt like weirdly prepared for lockdowns because I was like, this too will pass. This is really hard. But we all have to make adjustments to our lives at times. Right. I’d already had to do that. So lockdown didn’t feel like a radical shock.
[01:07:25] Jameela No. It felt honestly felt like a holiday.
[01:07:28] Meghan It felt kind of normal in a way.
[01:07:28] Jameela for me.
[01:07:29] Meghan And I was like right. This is what we all need to do. So I look at friends of mine, I think, right, this rat race is going to catch up with you eventually. And I have the perspective to be able to say like slow down. But then I get caught up in it, too.
[01:07:40] Jameela Because it’s fun. There’s fun to be had. That’s fun to be had. I went out on Oscars night until like five in the morning, and then I was fucked for three days. And there are times where you go, Oh, that was worth it.
[01:07:54] Meghan That was worth it.
[01:07:54] Jameela That was worth it. But it’s just about picking what is worth it. It sounds to me like fundamentally that book tour, as fucked as you are, was worth it. But maybe there are alterations you make next time. Maybe. Maybe you have more dates in between, you know, which is harder when you have kids. But, you know, you maybe you take a little bit more time and space that shit out. And I’m one of the greatest, I think, gifts of me getting old and just not giving as much of a fuck is that I’ve started to tell the people I work with that I do have limitations. It doesn’t mean I’m less skilled. Thank God for the one aspect of the pandemic, which meant that we were allowed to work from home because I’ve been sick for like, really sick for like the last one, two, three, six, six and a half months. I have been barely in and out of my bed. And thank God I’ve been able to do this podcast and my other podcast from my bedroom, like my bed is right behind me because I my career would be over and I would lose my home, you know? So God, God bless the fact that we’re allowed to work from home now, may that always remain an option for many of us, but also just learning that I’m not weak, I’m actually incredibly strong. And it also takes incredible strength to know your limitations, not other people’s limitations for you. When doctors my doctors told me I would never do anything, I’ll never achieve anything and I’ll be in a wheelchair by the age of 21 and dead by the time I’m 50. Because they didn’t know there was a difference back then before between like vascular, which is, you know, really shortens your lifespan. And ATDS, which I have. So there’s tremendous strength in that self-reflection. And and I really thank you for your book.
[01:09:32] Meghan Thank you.
[01:09:32] Jameela Really thank you. And like now when people say, what do I do? What do I send my doctor or my loved ones, they’ll understand me or my parents. I’m going to send them your book.
[01:09:41] Meghan Thank you.
[01:09:42] Jameela Because and I and I hope everyone does, because you’ve created an extraordinary Bible of of information and relate ability that is going to be it must already be so like it is already like it’s already so acknowledged and beloved in the short time in which it’s been out. But it’s such a vital piece of work and it’s going to change a lot of people’s lives. And so thank you for that.
[01:10:06] Meghan Thank you. That’s incredibly meaningful to hear. Thank you. Thank you.
[01:10:10] Jameela It’s been such a fun. I could chat to you for 45 hours.
[01:10:12] Meghan I know we could do a whole series.
[01:10:15] Jameela But honestly. I mean, I felt this is a beginning of something. And this this is the beginning of something. I really appreciate you.
[01:10:24] Meghan And just to say I you know, it is funny. It makes you, me realize how alone one is in one’s illness to talk to another person who gets it. So there’s an immediate shorthand. So I feel very seen.
[01:10:36] Jameela Oh, good. I’m glad. I’m really glad. And I may we all continue to push for biology.
[01:10:44] Meghan To science.
[01:10:45] Jameela To to exist outside of what is just profitable in the West.
[01:10:49] Meghan Exactly. You know, and so it’s more than profits. It’s actual wisdom.
[01:10:52] Jameela 100%. Thank you. Please come again. Come again 1000 times onto this podcast. You’re welcome anytime.
[01:10:58] Meghan Thanks for having me.
[01:11:01] Jameela Thank you so much for listening to this week’s episode. I Weigh with Jameela Jamil is produced and researched by myself, Jameela Jamil, Erin Finnigan and Kimmie Gregory. It is edited by Andrew Carson. And the beautiful music you are hearing now is made by my boyfriend, James Blake. If you haven’t already, please rate review and subscribe to the show. It’s a great way to show your support. We also have a bonus series exclusively on Stitcher Premium called Ask Jameela Anything. Check it out. You can get a free month of Stitcher Premium by going Stitcher.com/premium and using the promo code I Weigh. Lastly over at I Weigh, we would love to hear from you and share what you weigh at the end of this podcast. You can leave us a voicemail at 18186605543 or email us what you weigh at IWeighpodcast@gmail.com. And now we would love to pass the mic to one of our fabulous listeners.
[01:11:53] Listener I weigh getting out of a deep state depression and enjoying life and everyone in it. Thank you.
November 27, 2023
This week, Jameela is joined by writer, broadcaster and feminist organizer Clementine Ford to discuss the historical roots of marriage as a tool of patriarchal control, the illusions surrounding modern matrimony and the modern marketing machinery that sustains its myth.
November 20, 2023
Jameela is joined by beauty culture critic Jessica DeFino in a candid conversation about where her current research and journalism is taking her, after years of covering a multi-billion dollar beauty industry for major women’s magazines & beauty apps in the US.